One Big, Fat Topic: Multiple Sclerosis And Weight

by Sara on September 29, 2012

Why is it unusual for us to talk about Multiple Sclerosis and weight? They both affect us so much and they do affect each other. But we often avoid acknowledging them together. Multiple Sclerosis itself isn’t the only part of having MS that affects our weight – all those drugs that we take for this that and the other play a large part in and of themselves. Between fast food, soda, genetically modified fruits and vegetables, and meat that has been filled with hormones and antibiotics, it’s a wonder we live long enough to even take the medications which alter our bodies on top of everything else. Not surprising that so many of us believe that diet and exercise play a large part in our disease course.

If you have followed this blog for long, you’ll know that I took Rebif for awhile before switching to Gilenya. Prior to starting Gilenya, I averaged 2 to 3 relapses per year, and I have been plagued with muscle and nerve pain since the onset of my disease. As someone who has been diagnosed relatively recently (less than 4 years so far) I am amazed sometimes at how much my body has changed. Once very dextrous, my hands are now clumsy. Once somewhat graceful, I am now constantly aware of the possibility of falling. Once an occasional motormouth, I stumble on words. Once of average weight, even if I always wanted to be thinner, today I find myself recovering from a type of weight loss surgery called vertical sleeve gastrectomy. Surgeons have laproscopically cut me open in 5 places on my abdomen and have removed most of my stomach, leaving only a tube (or sleeve) between my esophagus and intestines.

What led to my weight gain? A life of constant work – stress and a desk job (aka sedentary lifestyle) mixed with the near-compulsory nightly drinks that can sometimes go along with tech and telecom. Poor nutrition due to misunderstanding portions and the importance of balancing individual meals, plus the constant work lunches and dinners at restaurants downtown. Low protein intake resulting from my general aversion to meat and enhanced by my misguided attempt to actually follow the Swank Diet and a job I held for the last two years that didn’t afford a lunch break. PCOS, a disease which affects 10% of women and leads to a hormonal condition in which it is difficult to lose weight and almost guaranteed to gain it (it also comes with high cholesterol and frequent diagnoses of diabetes). Heat sensitivity has always kept me indoors with the air conditioning, hiding from the hot South Carolina spring, summer, and fall.

All of these things led to me becoming overweight. But what pushed me so far as to qualify for and need bariatric surgery? I cannot discount the effects of Multiple Sclersosis:

For almost four years I have spent hours upon hours sleeping on my time off instead of being active. Or lying down in pain or just to rest. Or a little muddled on muscle relaxers or Loritab. Or unable to get around due to weakness and muscle fatigue. MS can sometimes have the ability to force you onto the couch. Medications have side effects that lead directly and indirectly to weight gain. Anyone who has taken round after round of steroid infusions probably ignores the dial going up on the scale. It feels unavoidable.

Relapses can knock you down.

For all this time, I was determined that I could get back on track by myself, radically restricting my diet and trying to exercise as much as I felt my body would allow. It didn’t work. I may have stopped gaining, but all of my efforts failed to help me lose anything.

The decision to seek out surgery was prompted by two things.

A pre-diabetes diagnosis on my 11th wedding anniversary.

Seeing photographs of myself where I felt unrecognizable. My inside was not being represented by my outside.

While I am still healing and am not close in any way to reaching my goal, at least the first and biggest step is out of the way. Getting approved for bariatric surgery is a difficult, time consuming process that took nine months to accomplish. The timing was terrible – my husband couldn’t be there for it and I didn’t have sufficient vacation time to make a proper recovery before returning to work. But I am past it. Now comes the arduous task of permanent lifestyle change – and we’re back to diet and exercise again. Discipline. Time management. Energy management. My biggest challenges will be overcoming my long hours at work (11 and 12 hour days with virtually no breaks) and changing lifelong habits like drinking multiple glasses of water with each meal.

Ultimately, I would not have taken this step without the motivation of avoiding diabetes. It is very common in women with PCOS (as much as an 80% rate of occurrence regardless of weight) and it runs in my family. Years ago I worked for a man with diabetes and witnessed its effects. Piece by piece he lost both legs to amputation. Multiple Sclerosis typically comes with something referred to as hypersensitivity or hyperreactivity. In other words I am utterly ticklish and almost anything can hurt me. Rebif injections were a nightmare and I don’t want to take insulin.

Bariatric surgery fails some patients, but I am praying that it doesn’t fail me. Practically speaking, I hope to gain a lot from weight loss. A smaller body will give me greater mobility and a greater ability to exercise. Being able to exercise will decrease my disease activity in the long term. Because I already have one very weak leg, there is a chance that I will need assistance in getting around at some point in my life – a lower weight means that it will be easier for others to assist me. Medications will be more effective. The MRI machine will feel less restrictive (but I will still have to dope myself up for that…). If I am successful I may be able to eliminate blood pressure and cholesterol medications while preventing the need for blood sugar medications. Perhaps one day the only medication I take will be Gilenya and my multivitamin! In a way, I feel that I am preparing for the rest of my life.

A long road lies ahead of me. I will take it step by step.

How has your MS affected your weight? Have you ever considered surgery to assist with weight loss?

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I was so happy to run across your blog. I too have Mulitple Sclerosis and have had it for 6 years now and I too suffer from the same PCOS, fatigue, muscle spasms, and just overall dexterity/mobility issues. I am scheduled in three weeks for Verticle Sleeve Gastriectomy. Have you had it performed and hoe have you done?

I am happy to say that I’ve done extremely well with the surgery. Fortunately I did not suffer the nausea that some people experience following the procedure. Since September I have lost approximately 80 pounds. The weight loss makes many things easier, and it seems to have mitigated some of my PCOS issues as well. I have no regrets about it at all. I still have over 30 pounds to lose to meet the target weight given to me by the doctors and I cannot wait to achieve it. I wish you the best of luck. Please feel free to contact me if you would like to discuss it privately.

Hi! I am so glad to finally find a website that talks about multiple sclerosis and weight-loss surgery. I, like many others, am on year six of an official diagnosis and probably seven years since symptoms started (maybe eight years?). I’m lucky that I’m not in worse physical condition…especially having recently seen a PBS special of a young male MSer’s video diary/log of much of his experience. (I think it was called “When I Walk” or something like that). The man has primary progressive whereas I have the more common RRMS. Back from my digress, I have so many overwhelming issues in my life now, some of which, in no specific order, are: that I am lost, isolated, frequently very depressed, I have NO ONE to talk to, my blood family is abusive and refuses to help me and actually functions most by shunning me and manipulating facts so no one has to interact with me, I have NO friends which I attribute to having gone through a divorce 3 years before 1st symptoms and where my friends acted like ants escaping from Raid (me), and when I disclosed having MS to recent potential friends I was treated like I had the plague where I was the subject of an MS ‘Intervention’ (2 ‘friends’ tricked me into thinking we were going out to lunch then after I ordered the fast food they just got water and made me listen to their long lists–everything they thought was a problem despite my having been told I had MS and was struggling with specific things–they used what I told them as reasons to verbally/psychologically attack me while purposely keeping MS out of it…and having been an avid outdoor sports adventurer, I no longer recognize myself as I am twice the size of my healthy normal. There’s more, but I’m limiting this to get at the huge body size issue. I want to know if someone who has MS can safely & successfully get bariatric surgery? If I can qualify for this WLS so insurance will cover most of it, where can I find the ‘how to’ instructions of getting insurance approved and the process started (how to find an ethical expert surgeon? get all the FAQs out of the way, find out if I can do this!). If I were able to get back to my healthy weight range and eventually to my ideal weight, I KNOW I’d have WAY less meds to take, I’d find a way to exercise in a safe way that includes recovery time and I’d be treated by strangers and family in the old positive ways I took for granted. I’d figure out how to make new friends that are trustworthy n able to earn my trust. As soon as 20 lbs are down…I’d be able to start a new life plan as long as parents stay alive…at their age it’s a matter of WHEN…then the sick family dynamics kick in rendering me homeless…While my writing is a jumbled mess, the substantial and quick weight loss would soooo help me start to act towards the right direction. I beg anyone who has the keys to weight loss surgery success on multiple sclerosis patients to describe it here or find a way to discuss it personally.
Best Regards,
April

I am so glad to have come across this. I was diagnosed with MS in 2011 at 28 years old and also have PCOS. I have seriously looked into what surgery would be the best for both conditions and keep coming across the sleeve. Thanks for the info!

Mee too. So glad to have fundet this. I’m 54 and was diagnosed two years ago (rrms). I was so worried my Aubagio medicin would not work properly with the GBP. I started the prosses one year ago and is now just 3 months away from having my sleeve OP. Thank you all for your stories and putting my mind at eas.

I was diagnosed with RRMS 10 years ago, and its been a journey of up and down. I am needing help this time. I’m going to my first informational meeting this week and was wanting more information on how it has worked with those living with MS, I can’t possibly be alone in this.

Hi JL. I was dx with Rrms 17 yrs ago when I woke up paralyzed on the entire right side of my body. Here I am severely obese now, fibro, pre-diabetic, pcos, high cholesterol, high bp and waiting for sleeve gastrectomy. Thought I was done with all my pre-op but ekg came back showing I may have had a heart attack in the past…so, now I wait to have an echo and stress test(medicine, not treadmill) to even see if I can be cleared for surgery. So- good luck to you! I have a friend with MS who had the sleeve a few months ago and she said she feels great. I think it will be a life changer 😉

Wow!!! Your post is a beacon of light for me! I am 47 yrs old. I too have MS. I am also a twin and I too work long hours. I’m a professor and director. I take lots of meds. Like you said, that does not help one in trying to lose weight. My twin is seeking information on the surgery but doesn’t want to do it if I can’t do it. She wants us both to look great. We are extremely close…and overweight. We both work lonnnnng hours. She is a Dean. Her job is extremely stressful. I do not want her to be prevented from having the surgery. Please let me know how you are doing to this date. I noticed that you wrote your post in 2013. I cannot wait to hear from you!

Thanks for sharing you experience. I had gastric bipass surgery Sept. 7, 2016, six days ago, and I am still recovering. I had lost more than 100 pounds and maintained most of that weight loss with support from Overeaters Anonymous but then after my MS Diagnosis “stuff” kept happening, job changes, job losses, relationships ending, becoming nearly homeless. deaths of loved ones… hard times…. lifestyle changes…. I couldn’t maintain the protocols I adopted in MS as part of a healthy lifestyle. Turned down three times for disability I was living way below poverty after having enjoyed an active and wonderful career life. My symptoms were bad. I couldn’t work enough to support myself and fighting for disability and to do the basics is so difficult when you are heavily fatigued as I have been, fatigue like walking through cement. I kept failing at OA and the weight kept rising and rising and rising. After shaming myself and asking “what’s wrong with me” and “why can’t I get it together” I started listening to the other members of OA. I realized I knew nobody with a chronic illness as advanced as mine who had much success with the program in terms of “weight loss.” Then I started reading the founding literature more thoughtfully. Overeaters Anonymous is not a diet club; I knew that. It doesn’t push weight loss. And many with chronic illneses such as MS simply don’t have the wherewithall to follow the structured protocols that make OA weightloss possible. I decided then to look into Weight Loss Surgery. I went to my first informational meeting in early December 2015 and I FINALLY had my surgery after completing the series of hoops my insurer required. I am still sore, still healing, but already I am certain it was one of the best decisions I’ve ever made. I used to be a very active person. The past two years I have become sedentary, depressed and isolated. I believe dropping the 100 pounds I need to drop will include my quality of life dramatically. And I have no doubt that I would never have been able to achieve it and maintain that weight loss longterm without this surgery. Thanks for sharing your story!!!!!! I hope more and more of us with chronic illnesses are able to stop blaming ourselves for the weight gain and address it pragmatically!

Insurance pays for this type of thing ? I have gained 30 lbs . Not only does it cause me more pain . But with my fatigue how is it possible to lose it I eat very consciously and was extremely healthy befor this I got none of my clothes On top of everything this does not help . Where to start?

Nov 8th, 2016 I had Gastric Sleeve surgery and it has been great! Over the past year (since Feb 2016), I have lost 60lbs. I have a lot of weight to go but I am feeling better than I have in quite awhile!

Hiya, thanks for your post! Years on are you still doing ok? I had bariatric surgery (lapband) prior to my diagnosis just knowing I had pcos and endometriosis. Following a diagnosis for fibromyalgia the weight starting piling on and then the band eroded and was removed. Now a diagnosis for MS and weight gain again and am wondering whether to look into a procedure again!